Survey-identified experiences of prediagnosis and diagnosis process among patients with COPD, asthma, interstitial lung disease and bronchiectasis

INTRODUCTION: Diagnosis of asthma, chronic obstructive pulmonary disease (COPD), bronchiectasis and interstitial lung disease (ILD) can be convoluted, and limited data exist on understanding the experience of diagnosis from a patient perspective. AIM: To investigate a patient’s ‘route to diagnosis’, particularly focusing on the time prior to seeking healthcare, and perceived experiences of the diagnostic pathway. METHODS: An online survey was distributed via the UK Taskforce for Lung Health and member mailing lists to patients as well as the website and social media accounts from 23 May 2022 to 5 July 2022. Analysis was descriptive; χ(2) tests were performed to make comparisons across diseases. RESULTS: There were 398 valid responses (COPD=156, asthma=119, ILD=67 and bronchiectasis=56). While only 9.2% of respondents who were eventually diagnosed with asthma had not heard of their disease, the corresponding percentages for COPD, ILD and bronchiectasis were 34.0%, 74.6% and 69.6%, respectively. 33.9% of people with bronchiectasis believed their delayed diagnosis was due to the health professionals’ lack of expertise or knowledge—24.4% for asthma, 19.2% for COPD and 17.9% for ILD. People with COPD were more likely (37.2%) and patients with asthma less likely (10.9%) to report they did not know the signs of potential lung disease (p<0.001). People with COPD were more likely to report that they did not appreciate the severity or urgency of the situation (58.3%) than people with asthma (32.8%), ILD (43.3%) or bronchiectasis (28.6%, p<0.001). The proportion of patients reporting that they were being initially treated for another lung condition was higher in people with bronchiectasis (44.6%) and lower in people with asthma (8.4%, p<0.001). CONCLUSIONS: Perceived reasons for diagnostic delay can help health professionals promote early diagnosis and management. Patients’ limited knowledge of respiratory diseases also played a factor, indicating the necessity to promote patients’ knowledge to encourage earlier help seeking.